Tetralogy of Fallot (TOF) Life expectancy... I've been searching for an hour and can't find a strait answer on the subject. I'm 32 years old with Tetralogy of Fallot (TOF), I've had a two corrective surgeries and just found out another procedure is on the way. The first was to shore up the hole between ventricles and open the pulmonary valve (when I was two years old). Unfortunate the doctor I was seeing from the ages of 18-25 never mentioned that I would need additional surgeries or that my right vertical was growing do to blood draining back through the valve. I finally went to a new doctor who told me I'd need a replacement valve surgery ASAP. My right ventricle did reduce in size after the valve replacement surgery. Here I am 7 years later and needing a new one. My new doctor is looking into getting me approved for the new procedure of replacing the valve no-evasively with a heart catheter. I've been lucky with my procedures so far, my first one by all acounts was done very well and my second went smoothly at the Cleveland clinic.
So as a new father I'd like to have some answers as far as life expectancy. Even if the answer is - we don't know for sure. I get different feelings about the subject every time I see my doctor. Worst case and best case would be nice. I know that there aren't very many examples since it's only been so long since we've been doing these procedures but how about an estimation? A best guess? Anything would help. I'm going to live with a large right ventricle and a valve replacement every 5-10 years. OK, great, can I keep it up for thirty years?? Any info would be appreciated.
From my quick read on the subject, it sounds like as long as you stay on top of your checkups and deal with new issues the outcome is excellent. I also read it's very common to need the valve(s) revised as you grow.
Some of the newer valves can last 20 plus years. Do you know why the newer adult valve started leaking?
There are 3 or 4 options one the valve replacement. If it were me I'd seek a couple opinions on them and choose the one you like best. The least invasive (cath) might not be expected to last as long as traditional.
hi dr aejaz malik responding . t.o f corrective surgery if done by expert and skill full surgeon , gives as good life expectancy as a normal healthy one has provided u check ur heart parameters on regular basis and if they r correct and optimum. ur case seems to be messed up .
I am a 41 year old male and was born with TOF in 1971. I was operated by Dr. Zerbini in Brazil when I was 2 and have lived a normal life since. However when I had my first kid at the age of 30 my wife told me to go check my heart just in case.
I have exaclty what you have a leaking right pulmonary valve and a bigger muscle on my right ventricule.
My doctors perfomed a procedure in 2007 to alieviate the leaking by placing a pulmonary STENT on my pulmonary artery. This was done without heart surgery but by catheter. It was a 3 hour procedure and I was just slept throught it and was out the next day. The difference was amazing. I felt young again. Since then I do follow ups every 2 years (ultrasounds, stress tests, etc.) they told me that later in life I may need a valve replacement but not for another 10 to 15 years. the leakage is very low now.
I am being followed at the Cardiology institut of Montreal Canada. I don't know if the STENT was the best long term solution but from hwat I have read so far this was the best for my case. I would suggest that you seek the advice of a heart specialist. Let me know if you need any more info. I just can't imagine going throught valve replacements every few years.
I am now 54 y/o with some problems like associated with TOF. I usually go into a strange rhythm once a year for as short as one day to as long as 1 month. It has not put me in the hospital but I did come close in 09. I have some scoliosis and 5 congitally fused vertebrae among other things. I was one of the first 30 complete heart stops at Stanford in California by Dr. Shumway in 1966 before he started doing the heart lung transfers. I was just turning 6 Y/O. One suture did not hold and you can hear that on auscultation. I finally found an adult congenital heart defect specialist so I am learning a lot now. I just found out that ADHD is very previlent in this group of people. Anybody else have trouble in school and have hearing difficulties like Tinnitus?
Holy smokes!!!, I'am a 33 male from North Dakota, USA, with TOF and you pretty much described me and my body to a tee!, right now to the 5 fused vertebra and ADHD!!!.... I don't have scoliosis but I do have hip dysplasia.... How did you discover about the ADHD and hearing in TOF patients???
Question I to have spine fused all the way down only 3 on bottom not fused do ya have chest pain from it being fused, my chest ackes a lot and I feel it's from my back, had heart check up and always good,
I am 58 and was born with TOF in 1957! I have not met anyone older than me with TOF, but my doc at the Mayo Clinic in Rochester said, "There are lots of you"...in her beautiful British accent. My 1st & 2nd surgeries were performed by Dr. Effler at the Cleveland Clinic in 1962, and I had a 50/50 chance of surviving. I spent 2 months in the hospital, contracted pneumonia and a staph infection on the Dacron patch on the hole, which is why I had the surgery twice. I did very well until my first child was born....you can read some of this on my blog.
To make a long story short, I ended up having a porcine pulmonary valve replacement in 2000. It is still "like new" per my doc at the Mayo and my doc at Kansas City Med Center. Because of my enlarged heart, the electrical system went haywire. So also in 2000 Dr. Gordon Danielson performed a "Maze" procedure to oblate extra nodes, because I had been experiencing frightening tachycardia episodes. In Aug. 2012 on a routine check-up at the Mayo my heart rate was 36....so I now have a pacemaker that also serves as a heart monitor in way. Although it doesn't pick up the fast heart rate when my heart is all-a-quiver due to taking Sudafed or something.
Nothing is routine with TOF!
I have 3 healthy children and a good life with a wonderful husband of 32 years. The heart medications I take because of the arrhythmia problems cause depression, but that is also a family problem. So I have bio-medical depression that I take medication for. I've taken very good care of myself and keep my weight at 132-136 by going to the gym and doing light weights, yoga, and walking on the treadmill. Diet and exercise are key! But more importantly, I have a strong Christian faith that keeps giving me hope as well as good friends that understand health issues.
I really appreciate you all writing about your ordeals, because I know that it is not an easy road!
Hi, I've just came across your question as I was looking for the same answer you asked. I to have TOF. I'm a 35 year old female with 3 children born 1980. I had my first TOF repair when I was 2 years old after it was missed by numerous doctors. When I was 12 I had my pulmonary valve replaced and something else done. Three years ago I had the pulmonary valve replaced again and a tricuspid repair, which wasn't fully successful. My aorta valve is also leaking. I've been told thathat I have heart failure and they can only pro long life now, which I fully accept, but I'd still like to know the rough answer to your question. After my last surgery I got afib which isn't helping me. I am slowly getting weaker, but to look at me you wouldn't know. Also until 4 years ago I worked full time. 60+ hours a week. Sarah.
Hallo. It sounds like this is a TOF club. My story is: Born in1971 in South Africa, had an TOF repair done in Bloemfontein(One of the surgeons studied under Prof Christiaan Barnard). They did a very good job!! I am 45 now.
Had a few arrhythmias during my life but diagnosed with Atrial Fibrillation when I was about 23. Since then had 7 cardioversions and one ablation. On 100mg Aspirin and 2,5mg bisoprolol. Also had/have scoliosis but it did not bother me that much (I do situps almost every day and stay very healthy and fit)
I'm a 69 year old male, born with a Tetralogy in 1947. I had what I've been told was the 5th Potts procedure, done by Potts in Chicago in 1950 and a takedown of the Potts and repair done at the Mayo Clinic in 1972. In 1997, I was given a mechanical aortic valve, and my aortic arch was replaced with one of a gore-tex like material. Later that year an ICD/pacemaker was implanted. I'm currently in the University of Michigan Health Center waiting to have my 4th ICD installed (the battery on the old one is at end of service) and a non functioning 3rd lead removed and replaced. I have some CHF, but am in good health generally. I still ride motorcycles. I hope to someday become the oldest living person born with a TOF, but I know my doctor has at least one TOF patient that's 72 or 73. .
Wow! So many people with the same condition as myself, almost like a TOF community aha! I am 19 years old and I have my surgery at the age of 2. I have no needed any surgery since and the surgery I had couldn't have gone any better. I have a checkup with a cardiologist every three years. Unfortunately, having this conditions absoloutly terrifies me, so its comforting to see other women on here with it also who have children and a family. I know it sounds silly as I am only 19 but I am terrified of death because of my condition. I suppose there is not one simple answer for life expectancy which I nievely was hoping for. Does anyone else suffer from sharp pains on the left side of their chest? I get these daily usually and they only last for a split second but I'm not sure what this could mean. Any advice would be great. Thanks, Pippa.
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